“You know, they should really work on making more of these hospice brochures with people on it that look like me.”
She smiles. Before even glancing at the hospice informational brochure, I immediately recognized her point. The photo shows an older adult in a wheelchair alongside a young adult caregiver. The older adult’s expression is pleasant and peaceful, with silver hair and eyeglasses looking back at us.
I gaze across the room. There sits a young woman in her early 30s with a headscarf wrapped around her head, covering the hair loss that occurred after several rounds of chemotherapy. The yellow flowers on her headscarf add some unexpected warmth and light to a difficult conversation. I then remember that she told me previously that yellow is her favorite color. This young woman is named May. I’ve had the privilege of getting to know May over the past several months as the social worker on her palliative care team at the local comprehensive cancer center. Her husband sits by her side. They’ve been married for six years. They have a 3-year-old and a 5-year-old child at home. After moving back to the area to be closer to family, she learned of her cancer diagnosis. May’s parents help with childcare when May is at her appointments. Today, we are talking about potential hospice services for May following discussions with the oncology and palliative care teams.
“May” is not a specific patient or person I have met, but rather a composite scenario of different patient perspectives, interactions, and experiences I have had while supporting young adults with serious illnesses at a comprehensive cancer center. Just as “May” lightheartedly pointed out, our society does not always do the best job of highlighting and providing representation of end-of-life care for young adults. Today, I wanted to take this opportunity to amplify the voices and experiences of young adults navigating end-of-life care in the setting of advanced cancer.
As oncology social workers, we often support clients as they navigate feelings of grief and loss throughout their experiences with cancer. For many young adults with cancer, their diagnosis may bring up significant feelings of grief, coping with perhaps a very unexpected change in their health status. While some young adults may have already navigated chronic illness prior to cancer diagnosis, others may not have encountered any health challenges until their cancer diagnosis. It can be overwhelming to adapt to so many changes within a short timeframe. In a phase of life where there are many life transitions, it can cause a significant amount of disruption and change. Perhaps they were just about to graduate and enter the career they have been dreaming of and working towards for years. Perhaps they just moved out of their family home to become more independent. Maybe they just set a date to marry their romantic partner, or they were just recently considering having children and expanding their family. Perhaps they were already coping with emotions surrounding feeling “behind” when seeing the experiences of others within their peer group. Maybe they were already balancing their role as the “sandwich generation,” caring for young children while also caring for their older adult parents with their own health concerns. Across these different experiences, I describe these examples not to provide an exhaustive list, but to illustrate the varied impacts of a cancer diagnosis during a very formative time in the lives of young adults. Following diagnosis, grief and loss needs may arise surrounding body image, parenting with cancer, sex and intimacy, financial and legal concerns, infertility concerns, isolation from peers, and additional concerns. It is important for oncology social workers to hold space for the variety of emotions experienced by young adults with cancer.
Some young adults with cancer may have disease progression despite cancer-directed therapies and treatments, which may lead to conversations similar to the conversation I was having with May, surrounding potential hospice services as a consideration for end-of-life care. This can bring up even more feelings as young adults cope with preparatory grief as they prepare for their own death. This may bring up grief surrounding loss of future hopes and plans, as well as concerns for their surviving loved ones, such as children, significant others, parents, friends, and other people in their support system. This may bring up opportunities to process this grief, as well as opportunities for legacy and meaning-making activities.
In a society that already finds death to be a taboo topic, discussions surrounding death for young adults can create even more discomfort for themselves, their families, care providers, and society as a whole. At times, just like May pointed out with the hospice brochure, it can drive disconnection when we aren’t willing to talk about it or engage with this topic, feeling like an erasure of the lived experiences of young adults navigating end-of-life. It’s worth noting, however, that not every young adult is going to want to talk about death and dying in the same way. It is important to meet people where they are as their oncology social worker, exploring their values, wishes, and preferences. When I was supporting my first young adult oncology patient, I realized I needed to further my own education to enhance my skillset and comfort level. I spoke with the palliative care team at the local children’s hospital to gain further insight and context. In the following years, I continued to learn about different cancer support organizations for young adults and continued to be curious. While all of this was tremendously helpful and of value, the young adults I was supporting were truly my greatest teachers. They reminded me to find gratitude in the little glimmers of joy throughout the day, finding opportunities to be present. They reminded me that laughter and loss can co-exist simultaneously, often sharing a joke with me during their clinic visits. Finally, and perhaps most importantly, they reminded me to always uplift someone’s humanity and personhood in oncology care. Cancer is just one part of who they are, and there are so many different components of the person sitting across from you. Stay curious, open, present, and listen to those experiences if they are willing to share.
